Have you or @jmnaciuch found any information or remedies that are helpful for pwME/CFS?
Has Science for ME funded any studies that have been helpful?
Evidence of White Matter Neuroinflammation in [ME/CFS]: A Diffusion-Based Neuroinflammation Imaging Study 2026 Yu et al
Has Science for ME funded any studies that have been helpful?
Jonathan Edwards
Senior Member (Voting Rights)
Neither of us has done research on ME/CFS. I am retired (and used to work on autoimmune disease) and @jnmaciuch is doing a doctorate maybe hoping to work on ME/CFS. I was originally asked to advise on ME/CFS research because i devised the original proof of concept study for what is known as B cell depletion therapy for autoimmune diseases (rituximab, now CAR T cells etc.).
Science for ME is just a forum for discussion run by volunteers. We don't have funds. Various members contribute to research in all sorts of ways, but mostly as individuals.
Why do you ask?
jnmaciuch
Senior Member (Voting Rights)
You are welcome to search my authorships under J Maciuch. ME/CFS is not the main focus of my PhD but I have published work in it and Long COVID. My interest in it is personal.
I do have a small potatoes study on alcohol intolerance in ME/CFS. Though I don't particularly consider my first ever publication from undergrad groundbreaking for obvious reasons.
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Mostly I was asking for if you know of any helpful research, not specifically if you have produced any.
I ask because I thought you might be able to point me in a good direction.
jnmaciuch
Senior Member (Voting Rights)
I think most people here would consider DecodeME to be a high-quality study. That provided genetic hints for what factors might predispose to ME/CFS, though as with all genetics studies it will often not tell you much about mechanism directly. If you are just looking for good quality overviews, it might be useful scrolling through some of the articles at https://mecfsscience.org/ run by @ME/CFS Science Blog
Jonathan Edwards
Senior Member (Voting Rights)
OK. I find a lot of the research helpful, often because negative findings help to narrow things down. The recent Edinburgh GWAS study has pointed us in the direction of synaptic regulation in the central nervous system and maybe an innate immune signalling system involving T cells. The epidemiological studies suggest that susceptibility at certain ages may be very important. That, along with increased susceptibility in women may provide clues as to what signalling processes are going wrong.
As our ME Science Blog member has put it, inflammation and other events related to blood vessel physiology do not look as if they are a signifiant part of the story. I personally think we will not find any pathology in muscle. One or two findings suggesting a possible analogy with narcolepsy are intriguing but may not turn out to take us anywhere.
The general view on S4ME is that we are much closer to understanding the problem than we were five or ten years ago and that we may be close to a more specific breakthrough that pinpoints the key signal pathway. A whole genome sequencing study would be a godsend and people are trying to set that up. The problem remains the lack of insight of funding bodies. In the past they might have claimed that no good projects were being submitted for funding but they cannot say that now.
Jonathan Edwards
Senior Member (Voting Rights)
Some geneticists at UCL. A neurologist at UCL. Brain tissue studies in Europe.
neophyte32
Senior Member (Voting Rights)
You're not giving us false hope: are there really researchers working on these areas? Are they funded? Are the Germans, who have the resources, aware of this? Especially Carmen Scheibenbogen, who seems to have influence with political authorities? I imagine there's no international collaboration...
Jonathan Edwards
Senior Member (Voting Rights)
Yes. Funding status varies but they have enough to be actually doing research. Maybe small beginnings at UCL but it is a major shift from 5 years ago.
Jonathan Edwards
Senior Member (Voting Rights)
If we are aware of it I assume that researchers going around the meetings are. Collaborations arise when there are people with complementary resources, interests and skills. German research seems to have been heavily invested in antibody studies and blood clotting but if there is money neurologists may get interested there too I guess.
neophyte32
Senior Member (Voting Rights)
Ahhh... yet I thought it was now obvious that we needed to target the central nervous system... time is running out. But thank you for your encouraging news.
Jonathan Edwards
Senior Member (Voting Rights)
what is obvious to people at the forefront of research tends to obvious to the majority of researchers about 15=20 years later. But that doesn't necessarily matter if there are some people at the forefront! The pity is that so much money gets wasted.